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Cancer Survivors’ Employment and Insurance Rights: A Primer for Oncologists

Cancer Survivors’ Employment and Insurance Rights: A Primer for Oncologists

ABSTRACT: Cancer survivors’ access to equal employment opportunities and adequate health insurance has changed significantly during the 1990s. New federal and state laws have expanded survivors’ rights to be treated fairly in the workplace, although some problems still exist. Survivors have experienced less progress, however, in obtaining and retaining adequate health insurance. This article reviews the problems faced by cancer survivors in securing and keeping adequate employment and health insurance. [ONCOLOGY 13(6):841-846, 1999]


During the past decade, cancer survivors have
witnessed a revolution in their access to equal employment
opportunities and adequate health insurance. With the passage of
several federal and state laws, survivors now enjoy the coverage of
civil rights laws designed to protect people with disabilities and
serious medical conditions from discrimination.

While survivors’ employment prospects have improved, however,
their insurance options have diminished. The dramatic shift from
fee-for-service to managed care plans has ushered in a stressful,
frustrating period of decreased access to ever-improving oncology care.

Working-aged survivors find that their cancer experience affects
their access to employment and health insurance.[1] The remarks of a
bone marrow transplant survivor—“I have not been able to
return to work and must depend on my wife to support our
family”[2]—illustrate the far-reaching impact that cancer
can have on an individual’s quality of life. This article
reviews the problems faced by cancer survivors in obtaining and
keeping adequate employment and health insurance, explains the legal
rights of survivors, and suggests ways that survivors and their
caregivers can advocate for their rights.


Impact of Cancer on Employment

Coping with the diagnosis and treatment of cancer can be a full-time
job, and yet few adults have the financial stability to give up their
employment during and after their cancer treatment. Most survivors
need to retain their employment status not only for the obvious
financial benefit but also for the accompanying health insurance,
self-esteem, and social support.

Some employers and coworkers treat cancer survivors differently from
other workers. Workplace problems most frequently reported by cancer
survivors include dismissal, failure to hire, demotion, denial of
promotion, undesirable transfer, denial of benefits, and hostility in
the workplace.[3]

A random telephone survey, conducted in 1996, questioned 500 cancer
survivors who were employed at the time of their treatment, 100
supervisors, and 100 coworkers.[4] The workers with cancer reported
being fired or laid off at five times the rate of other workers in
the United States (7% vs 1.3%).[4]

A follow-up, random telephone survey, conducted in June 1997,
interviewed 662 employed adult Americans who had not previously been
diagnosed with cancer. This survey found that 41% worried about
losing their job if they were to be diagnosed with cancer, and 14%
stated that they were “very worried.”[5]Their fear of
discrimination was so great that 18% of respondents said that, if
they were diagnosed with cancer, they would not disclose this
information to anyone at work.[5]

An earlier survey of Hodgkin’s disease and leukemia survivors
indicated that more than one-third attributed at least one negative
vocational (employment, income, or education) problem to their cancer.[6]

One reason survivors legitimately fear discrimination at work is
because their supervisors and coworkers have misconceptions about
survivors’ abilities to work during and after cancer treatment.
Of the 200 supervisors questioned in the 1996 survey, 33% believed
that the survivor could not handle the job and cancer; 31% thought
that the employee needed to be replaced.[4] After working with a
survivor, 34% of supervisors and 43% of coworkers said that they
would be less concerned about working with a survivor in the future.[4]

A 1992 (unpublished) survey of 200 supervisors, conducted by the
public relations firm of Yankelovich, Clancy & Shulman, found
that 66% were concerned that employees with cancer could no longer
perform their jobs adequately. Nearly one-half of respondents said
that a current cancer diagnosis would affect their decision to hire a
qualified applicant. Of the 500 employees surveyed, 13% believed that
coworkers with cancer probably would not be able to do their jobs.
One in four coworkers thought that they would have to work harder to
pick up the slack.

In quality-of-life assessments of cancer survivors, survivors report
that being able to work full-time and have an “enjoyable”
job contribute to a better quality of life.[2] One survivor commented
that her quality of life was improved by “being able to work
productively and hav[ing] good emotional relationships and . . . some
sense of purpose.”[7] Survivors reported that work provided not
only an important source of emotional and financial support but also
a “sense of normalcy.”[7] Others noted the sense of control
that work provided: “I think that the need to go back to work or
to stay at work depending on your treatment, is extremely important.
. . .I at least had control over that. I could go to work.”[7]

The physical and emotional demands of cancer treatment make it
difficult for many survivors to work without interrupting their
previous employment schedule. Survivors of thyroid cancer reported
that “work productivity, concentration, and quality changed
dramatically” within a few weeks of discontinuing thyroid
hormone medication.[8] Some literally had to be carried home from
work.[8] Fatigue resulting from cancer treatment affects
survivors’ work performance.[9] One exhausted survivor
commented, “I struggled to maintain my part-time job with
integrity, poised on the edge of depression.”[9]

Most employers treat cancer survivors fairly and legally. Some
employers, however, erect unnecessary and sometimes illegal barriers
to survivors’ job opportunities. Most personnel decisions are
driven by economic factors, not by charitable or personal
considerations. Some employers face increased costs due to insurance
expenses and lost productivity. Other employers worry about the
psychological impact of a survivors’ cancer history on other
employees. Some employers fail to revise their personnel policies to
comply with new laws. Employers who have updated personnel policies
may not properly train their personnel managers to comply with these laws.

Cancer Survivors’Employment Rights

Although cancer survivors do not have an unqualified right to obtain
and retain employment, they do have the right to be treated according
to their individual abilities and to have some freedom from
discrimination. Two federal laws, the Americans with Disabilities Act
(ADA) and the Family and Medical Leave Act (FMLA), provide cancer
survivors with some protection against employment discrimination.

The Americans with Disabilities Act prohibits some types of
job discrimination by employers, employment agencies, and labor
unions against people who have or have had cancer.[10] (The ADA also
protects cancer survivors from discrimination in insurance and
adoption.) All private employers with 15 or more employees, state and
local governments, the legislative branch of the federal government,
employment agencies, and labor unions are covered by the ADA.

A “qualified individual with a disability” is protected by
the ADA if he or she can perform the “essential functions”
of the job. The ADA prohibits employment discrimination against
individuals with a “disability,” those with a
“record” of a “disability,” or those who are
“regarded” as having a “disability.” A
“disability” is defined as a major health
“impairment” that substantially limits the individual’s
ability to carry out everyday activities, such as driving a car or
going to work.

Cancer is an “impairment” as defined by the law. In most
circumstances, cancer survivors, regardless of whether they are
receiving treatment, are in remission, or are cured, are protected as
persons with a disability because their cancer substantially limits a
major life activity.

Although many courts have fairly assessed cancer’s impact on a
survivor’s life and have ordered employers to pay damages for
violating their employees’ rights, other courts have boxed
survivors into a Catch-22. Some courts have considered survivors who
could not perform their essential job duties as “not
qualified” under the ADA, and yet have deemed survivors who
could work as “not substantially limited.”[11] For example,
one court ruled that a fired breast cancer survivor was not a person
with a “disability” as defined by the ADA because, although
her breast cancer was an “impairment” under the ADA, it did
not substantially limit her major life activity of working.[12]
Courts that have so interpreted the ADA have suggested that survivors
could seldom benefit from the ADA either because they are too ill to
work or are too healthy to be considered disabled.

Although courts must consider whether a cancer survivor meets the
definition for having a disability on a case-by-case basis, the
guidelines developed by the Equal Employment Opportunities Commission
(EEOC)* and a recent ruling by the United States Supreme Court[13]
indicate that, in most circumstances, cancer is a disability under
the ADA. On June 25, 1998, the United States Supreme Court ruled in
Bragdon v Abbott
that a woman who was infected with the human
immunodeficiency (HIV) virus, but had no symptoms of acquired immune
deficiency syndrome (AIDS), had a disability under the ADA.

*The EEOC issues
detailed regulations that it uses to enforce the ADA. The regulations
specifically cover cancer survivors as the type of “individuals
who have recovered from a physical...impairment that previously
substantially limited them in a major life activity” (28 CFR 35.104).

Resources for Cancer Survivors Seeking Information on or Assistance
With Employment or Insurance Issues

The National Coalition for Cancer Survivorship (NCCS)

1010 Wayne Avenue, 5th Floor
Silver Spring, MD 20910
(888) YES-NCCS (937-6227)

Provides publications, answers to questions about employment rights,
and assistance locating legal resources. Publications include Working
It Out: Your Employment Rights as a Cancer Survivor (booklet), What
Cancer Survivors Need to Know About Health Insurance (booklet), and A
Cancer Survivor’s Almanac: Charting Your Journey (325 page
paperback available directly from the NCCS and in most bookstores).

Cancer Care, Inc.

1180 Avenue of the Americas
New York, NY 10036
(800) 813-HOPE or (212) 302-2400

Provides assistance by oncology social workers, including answers to
questions about employment, insurance, and finances. Provides help in
locating local resources.

American Cancer Society

1599 Clifton Road NE
Atlanta, GA 30329-4251
(800) ACS-2345

Focuses on research and education. Local units offer public and
professional education programs, referral to community resources, and
patient and community services.

Equal Employment Opportunities Commission (EEOC)

(800) 669-4000 (to obtain the location of regional EEOC office)
(800) 669-EEOC (to obtain free publications about the ADA)

Federal agency that enforces the Americans with Disabilities Act
(ADA). Individuals must file a complaint with the EEOC within 180
days of the discriminatory act. The EEOC will attempt to settle the
dispute. If no settlement is reached, the EEOC may appoint an
investigator to evaluate the claim, may sue on the claimant’s
behalf, or may grant the right to file an individual lawsuit in
federal court.

Although Bragdon v Abbott was not specifically about cancer,
the opinion makes three key points that will help cancer survivors in
future cases. First, in deciding whether a person is covered by the
ADA, federal courts should give great deference to federal
regulations that interpret the ADA. These regulations state that
cancer is a physical impairment, give examples of situations in which
cancer-based discrimination is illegal, and reject a Catch-22
interpretation of disability.

Second, infections, such as HIV, are covered by the ADA because they
have a constant, detrimental effect on the infected person’s
hematologic and lymphatic systems from the moment of infection. Many
cancers similarly affect the hematologic and lymphatic systems.

Third, reproduction is a major life activity, and, thus, someone with
HIV, who is substantially limited from reproducing, is protected by
the ADA. The person need not be totally unable to engage in a major
life activity, such as work or reproduction. Many cancer survivors
face similar obstacles to work and reproduction.

The ADA prohibits discrimination in most job-related activities, such
as hiring, firing, and benefits. In most cases, a prospective
employer may not ask applicants if they have ever had cancer. An
employer has the right to know only whether applicants are able to
perform the essential functions of the job. A job offer may be
contingent upon passing a relevant medical examination, provided that
all prospective employees are subject to the same examination. An
employer may ask detailed questions about health only after making a
job offer.

Cancer survivors who need extra time or help to work are entitled to
a “reasonable accommodation.” Common accommodations for
survivors include changes in work hours or duties to accommodate
medical appointments and treatment side effects. An employer does not
have to make changes that would pose an “undue hardship” on
the business or other workers. “Undue hardship” refers to
any accommodation that would be unduly costly, extensive,
substantial, or disruptive, or that would fundamentally alter the
nature or operation of the business. For example, an employer may
replace a survivor who has to miss 6 months of work that cannot be
performed by a temporary employee.

The ADA does not prohibit an employer from ever firing or refusing to
hire a cancer survivor. Because the law requires employers to treat
all employees similarly, regardless of disability, an employer may
fire a cancer survivor who would have been terminated even if he or
she were not a survivor.

The ADA does not require employers to provide health insurance, but
when they choose to provide such insurance, they must do so fairly.
An employer may not refuse to cover a cancer survivor under a group
health plan unless the employer can show that the failure to provide
health insurance is based on legitimate actuarial data that the
insurance plan would go broke or suffer a drastic increase in
premiums, copayments, or deductibles.

Most employment discrimination laws protect only the employee. The
ADA offers protection that is more responsive to survivors’
needs because it also prohibits discrimination against family
members. Employers may not discriminate against workers because of
their relationship or association with a “disabled” person.
Employers may not assume that an employee’s job performance
would be affected by the need to care for a family member who has cancer.

The Family and Medical Leave Act[14] requires employers with
at least 50 workers to provide employees with up to 12 weeks of
unpaid leave to receive treatment for their or their dependent’s
serious medical illness, including cancer.

State Laws—In addition to these federal statutes, every
state has a law that prohibits discrimination against the disabled.
Most state laws cover both public and private employers, and many
cover employers with fewer than 15 employees. A small number of
states, such as California, expressly prohibit discrimination based
on cancer history. Many state laws protect individuals with real or
perceived disabilities and, therefore, cover most cases of
cancer-based discrimination.

The rights of cancer survivors who are not “handicapped”
are unclear in those states in which courts have not addressed the
issue and one must have a physical or mental impairment to bring a
claim. Furthermore, many states have medical leave laws, some of
which provide more generous leave than the FMLA.


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